If the sight of twinkling holiday lights causes fear instead of cheer, you’re not alone. Countless people with hiv suffer from seasonal depression. but there’s hope—and healing—to be found
Winters are mild in Tennessee,” says Dan Jones, 42, his Southern drawl
sugarcoating the harrowing depression that has frequently marked his 20
years living with HIV. “But the trees lose their leaves; the sun hardly
comes out; it rains a lot; and there’s just no color anywhere.” Indeed,
Jones’ seasonal blues are as predictable as the autumn rain.
“It
always comes on around mid-November, reminding me of Thanksgiving
1981,” he explains, “when my parents found a letter I’d written to a
friend about my sexuality. Everyone was screaming about it in the car
on the way to Grandma’s house for Thanksgiving dinner. When we got
there, we had to smile and pretend nothing happened.” Jones’ parents
threatened to take him to church to straighten him out. He escaped to
Memphis instead—but can’t escape the memories.
As Jones was
dealing with the family drama, he also suffered his first bout of
pneumocystis pneumonia (PCP). Then his father died. The one-two punch
made his already wintry symptoms unbearable. “I started having trouble
staying on my HIV meds,” Jones recalls. “I’d go on and off them, and my
doctor would yell at me, put his finger in my face and say, ‘Look, if
you don’t take these meds, you’re going to die.’ I was so depressed I
said, ‘Fine—let the virus kill me.’ I figured, what did I have to live
for?”
Greater expectations Depression
isn’t the only bummer people with HIV often brave as the days grow
shorter—and holiday checkout lines grow longer. During the holiday
season, society expects you to ramp up your social activity to
maniacally festive highs and empty your wallet to prove your love and
generosity. You may also have to spend time with family members who at
best annoy you and at worst emotionally destroy you.
If you
aren’t Christian or a part of the social, economic and cultural
mainstream, it can seem as though your own life and culture is
invisible, pushed aside to make room for a gingerbread family
Christmas. The pressure to do and be more than you’re capable of can be
particularly oppressive if you’ve lost your get-up-and-go to HIV. It’s
enough to make you want to crawl under the comforter until January
2—and deny your emotional turmoil, deep-sixing it till summer returns.
But
it is possible to do something about depression, whether it’s a mild
case of winter blues or an all-out major depressive episode. When
you’re trapped under a mountain of doldrums, taking the steps laid out
here may not seem easy, but doing so could bring light to a long, dark
winter. It may also save your life.
Judith Rabkin, PhD,
professor of clinical psychology and psychiatry at Columbia University,
says, “Most people with HIV live with a chronic, low-grade depression,”
adding that Jones’ poor med adherence is common, too. Rabkin considers
depression “a significant predictor of antiretroviral nonadherence” and
a crucial reason people must monitor their moods. This is especially
true during the holidays, when chaotic changes to your daily routine
can further complicate adherence, in turn elevating the risk for
developing HIV drug resistance. But when depression ices your heart and
mind, it can obliterate your ability to respond even to serious threats
like treatment failure.
That’s why, almost on a whim, Jones
adopted Oscar, a pesky miniature schnauzer. He says it was one of the
smartest moves he ever made: “My depression was so bad I didn’t want to
leave the house. But a dog needs to be walked, and he just wouldn’t let
up on me until I took him out.” The walks with Oscar got a little
longer each day, and Jones slowly regained his strength. “If it weren’t
for him, I wouldn’t be here. That daily routine of getting up and
walking him keeps me going. He’s made the winter much easier on me.”
Having
someone or something to care for can add purpose to life and keep you
going. But Jones also takes the antidepressant Lexapro, which, he says,
“helps a little.” In addition, he gives credit to the online HIV
communities he’s found at websites like AIDSMeds.com. “I’m building a
new family for myself,” he says.
Snap out of it? Yeah, right We’ve
all played the Grinch from time to time. When we’re surrounded by
joyous holiday revelers, frantic shoppers and saccharin television
morality tales in Technicolor animation, what once might have filled us
with anticipation and excitement instead turns sharp and metallic and
downright ghastly. “The holidays can be especially painful if families
don’t get along or if money problems mean not being able to buy gifts,”
says psychotherapist Karen Godfredsen, the mental health clinic
director at the AIDS Resource Center of Wisconsin, in Milwaukee.
She adds that when the time comes to play Secret Santa in the workplace
or to provide family and friends with the best gift ever, it’s possible
to strain your bank account and meds-stretched budget beyond immediate
repair. Steve Tibbetts, a licensed independent clinical social worker
in Minneapolis, agrees, saying, “With depression, there’s a powerful
impulse to spend money you don’t have.” He adds that overspending is
one of many unhealthy responses to the negative self-image HIV can
sometimes bring.
Your blues ain’t like mine One
culprit seems to wreak more misery on HIVers than the average person:
seasonal blues. Tibbetts knows the warning signs all too well. “What
happens in winter is, people get into a bad cycle without realizing
it,” he says. “Inactivity, irregular sleeping and eating—it all
exacerbates depression.” Tibbetts, who has 20 years of experience in
HIV mental health services and grief counseling, says that about half
his HIV positive clients in the Twin Cities become more depressed in
wintertime. Godfredsen adds that half her clients also become more
depressed during winter: Milwaukee winters last nearly half the year,
and temperatures frequently dip to 15 below.
“People are often
trapped in their homes then, ” Godfredsen explains. When a 4:30 pm
sunset makes even a walk in the park seem formidable, she says her
clients begin to despair. She explains, “The coping strategies they use
to deal with their HIV on warmer sunny days are no longer available to
them in wintertime—even something as simple as sitting on the
front porch chatting with the neighbors or meeting their friends for
lunch.” The season also can have a physical impact. “The cold is
extremely hard on people with weakened immune systems, particularly
those who deal with chronic pain,” she says.
Recognizing
depression in yourself—and sorting out the causes and severity—can be
challenging (see “Mood Indigo,” below). Some people may not immediately
recognize winter depression, because it can feel a lot like fatigue.
Dr. Rabkin says, “With HIV positive people, fatigue and depression are
connected.”
One obvious sign of depression is a change in
diet. Diana Johansen, a clinical dietitian at the Oak Tree Clinic, says
that with HIV, there is no “one size fits all” eating pattern. Some
people eat a lot more, specifically sweets, later in the day, though
Johansen says, “The most common symptom is appetite loss or skipping
meals.” Not only does this worsen problems like wasting and
lipodystrophy, it’s bad for the head. Letting blood sugar levels drop
too low reduces the supply of the feel-good chemical serotonin.
“Isolation
is also a danger sign,” adds Godfredsen. “There is a tendency when
winter comes to shut yourself in the house, when actually, it’s
probably the worst thing you can do.”
Dan Jones now thinks he
let too much time go by before seeking help. “People often don’t
mention depression, let alone seasonal depression, to their HIV
doctor,” echoes Tibbetts. “They’re afraid their doctor won’t know
anything about their problem.” But when it comes to winter depression
and HIV you can’t afford to keep mum or go it alone. And there’s no
time like the present. If HIV advocates are right, dealing with
depression now—rather than later—is a must. In 2006, the Ryan White
Care Act—which covers not only medical care and mental health care for
people with HIV—may next year be shifting a significant portion of
funds away from the cities where many longtime PWAs live. Cash-strapped
state governments have also proposed drastic cuts to their Medicaid
programs. Both the private-insurance industry and the proposed (and
possibly on-hold) Medicare drug benefit program are increasingly
threatening greater restrictions on people’s access to mental health
care and the newest medications for depression and anxiety. At a time
when policy makers are thinking only about cuts to most social services
and insurance companies struggle to rein in costs, HIV advocates may
end up fighting a losing battle simply to maintain this year’s status
quo concerning accessibility and funding for mental health services.
These issues mean that people with HIV who have access to a social
worker or case manager may want to explore their options.
S.A.D. about you A
particularly severe form of winter depression is a condition called
seasonal affective disorder, or S.A.D. In the 1990s, Michael Terman,
MD, a researcher with the New York Psychiatric Institute, proved a
connection between a lack of sunlight and depressed moods, thus
pioneering the use of light therapy for depression. “A case of S.A.D.
fits the definition of a major depressive episode,” he says. That means
a minimum of two weeks of persistent symptoms, including obvious
changes in sleep patterns and appetite, feelings of hopelessness,
possibly suicidal thoughts and difficulty concentrating. Dr. Terman
emphasizes that a generic case of mild “winter blues” is far more
common than a clinically diagnosable case of S.A.D. He says the
difference between S.A.D. and winter blues is one of degree and adds,
“Whereas S.A.D. is debilitation, people with winter blues can generally
go about their daily activities. They may feel miserable, but they are
able to function in winter. They slog through it.”
Both S.A.D.
and winter blues can be treated, says Dr. Terman. Treatment might mean
antidepressants or light therapy (spending time in front of specially
designed light boxes that mimic sunlight without its damaging UV rays).
Light therapy works by resetting the body’s internal clock (circadian
rhythms). Dr. Terman’s research shows that even nonseasonal depression
can be lifted by light therapy, which can be used along with
antidepressants. If you think you might have S.A.D., though, Dr. Terman
doesn’t recommend trying to diagnose yourself. As with any serious form
of depression, seeking help from a professional is critical.
Tell me about it! A
psychiatrist, therapist or support counselor can be more than a great
resource for diagnosing and treating depression of all kinds. They can
also provide practical suggestions for HIV holiday survival. Tibbetts
frequently offers this kind of advice to clients: “Make a holiday plan
and make it early,” he says. According to him, a central part of that
plan is to “decide for yourself what’s important this year. This may
mean visiting old friends instead of relatives. If your family makes
you miserable, some boundary setting is probably in order. Consider cutting a weeklong family visit down to two days. Invite people to your house rather than traveling.”
“With
any kind of depression, you need to put your own well-being first,”
says Tibbetts. This is even more crucial if you’re recovering from
addiction or grew up in a family where substance abuse is a problem.
The holiday season is full of emotional triggers that can make you want
to reach for a drink or a drug and that can lead to skipping meds and
an even deeper plunge into depression. Cathy Reback, a researcher on
HIV and substance abuse with the Friends Research Institute and
the Van Ness Recovery House in Los Angeles, offers this holiday advice
to people with HIV in their first year of recovery. “Go to
clean-and-sober events. Bring a friend who is clean and sober with you
on a family visit. The most important thing to is to recognize that the
holidays are often difficult for people in recovery, but with help, you
can get through it. You don’t have to relapse.”
Home is where the hurt is “My
holiday depression began before I tested positive,” says John Kushik,
24. In 1998, when his mother died of cancer, he lost his only close
family member. Kushik says, “After she died, Christmas didn’t feel like
Christmas anymore.” Still, Kushik tried to make the best of it for the
next five years with the rest of his family in Richmond, Virginia.
“Before my mom died I looked forward to Christmas. Afterward, I’d go
home to my family, and my dad would make negative comments about my
lifestyle, that I couldn’t keep a job.” His sister, he says, also
wasn’t much help. “I really felt alone.”
In 2003, he tested
positive and decided to leave Richmond for sunny Biloxi, Mississippi.
“I was attracted to the ocean, the excitement of a coastal city.” He
decided to stop going home for the holidays. “I asked myself, ‘Why
should I go back to Richmond and expose myself to all that
negativity?’” But as usual, Kushik’s depression kicked in that year
around mid-November. “My friends started asking me what was wrong.” He
became quiet, withdrawn and moody.
“The holidays are a time of
memory [for many],” says Tibbetts, “and some of these memories are
painful.” Feelings of grief over a lost loved one can intensify during
the holidays, even if you thought you were getting over it. “If your
own family never accepted your HIV status or your sexuality or if they
just aren’t supportive of you,” says Tibbetts, “it can make the
holidays’ familial focus particularly painful. But just because you’re
related to them, doesn’t mean you have to spend the holidays with your
family of origin.
“People ask, ‘You mean I can do that?’ Well,
yes, you can,” Tibbetts says. “Rather than just assume you need to
spend time with people who trigger your depression or addictive
patterns, think about who in your life truly supports you and spend
time with them.” Redesigning the holidays for yourself may be a
creative challenge, but as Kushik discovered, it’s worth the effort.
“It
was a tough decision,” Kushik says. “I’ve always been a family-oriented
person, but what I needed was something my family just wouldn’t give
me.” Instead, Kushik turned to his friends for support and was
pleasantly surprised. “I found I could really open up to them. They
started inviting me to dinners and parties; they opened their homes to
me.”
In August, Hurricane Katrina wiped out Kushik’s apartment
in Biloxi, and he has now relocated to Chicago. Despite it all, he’s
surprisingly upbeat. “I may have lost my possessions, but I didn’t lose
my friends. Friends aren’t replaceable.” Kushik is excited about
Chicago’s HIV support services and thinks it’ll be a better place to
manage his virus and his holiday depression. He isn’t worried about
Christmas in the windy city this year. “I’m going to invite a few close
friends over for dinner and definitely decorate the apartment. That’s
something Mom was always big on.”
Mood Indigo Finding your place in the depression spectrum
The
symptoms of clinical depression can overlap with
HIV-related fatigue. See a pro if you or your friends notice changes in
any of the following:
DIET
You lose interest in food, skip meals or binge on sweets and starches.
SLEEP & ENERGY
Fatigue keeps you in bed most mornings.
Your exercise routine starts limping.
You sleep later every day or take long naps in the afternoon—but don’t awake refreshed.
Answering your phone or spending time with friends and family starts becoming a chore.
THINKING & MEMORY
It becomes a struggle to think or concentrate.
You miss appointments or work, fall behind on bills and skip med doses.
MOOD
You cry frequently.
You react to sunset with anxiety or despair (more likely with S.A.D.).
You think frequently about death or suicide.
Feelings of sadness or anger grow more frequent.
S.A.D. SURVEY Take
Dr. Terman’s online test to check your S.A.D. symptoms. Go to
www.cet.org and click on the “Personalized Inventory for Depression and
S.A.D.” offered in the text menu on the left side. Print the results,
and bring them to your HIV doc or mental health counselor.
Happy Highways Traveling Sane
Holiday
traveling canbe stressful when airports are packed, flights are delayed
and winter storms scuttle the best-laid plans. Whether you’re motoring
on the road or flying the not-so-friendly skies, here are some tips for
taking care of mind and body:
Pack your meds first, making sure to include a two-day backup supply, in case you’re snowed in or get stuck in an airport.
Pills should go in a carry-on bag and not be checked with luggage.
Use tricks to remind yourself to take your pills.
Write yourself notes, or travel with a mini travel alarm clock in your
pocket set to go off at dosing time.
Don’t skip meals! Airlines barely feed anyone these
days, so bring your own food and water. Don’t expect to find food that
meets your needs in airports or on the road.
Drink plenty of water, especially on airplanes,
where high altitudes and dry air sap body fluids faster than you can
say bronchitis.
If you’re flying several hours, book ahead for a special meal, if possible.
If you’re leaving the country, see your doctor about
preventive medicine and extra vaccinations for infectious diseases. You
may also want to call the federal Centers for Disease Control and
Prevention (CDC) in Atlanta at 404. 332.4555 for travel advisories or
go to www.cdc.gov/travel.
Get plenty of sleep before, during and after the trip.
If you see a psychotherapist, get an emergency or on-call phone number, in case you need to talk.
Members of 12-step programs should note the times
and locations of meetings at your destination city before leaving home.
Check the websites of groups like AA, NA and Al-anon.
